German genetics law a double-edged sword

MELBOURNE — In April, Germany’s parliament placed limits on the use of genetic diagnosis. Is the new German law a model for other countries to follow as we grapple with the ethical issues posed by our growing knowledge of human genetics?

Some provisions of the German law draw on the widely shared ethical principles of respect for individual autonomy and privacy. No one can be tested without his or her consent. Neither employers, nor insurance companies, may require genetic testing. Individuals are granted both the right to know — to be informed of the results of any genetic test about themselves — and the right to choose to live in ignorance of what a genetic test may predict about their future. To discriminate against or stigmatize anyone on account of their genetic characteristics is prohibited.

Desirable as these provisions seem, they could impose a heavy cost on German companies.

If insurance companies outside Germany are permitted to require genetic tests while German companies are prohibited from doing so, then people who know they have life-shortening genetic diagnoses will get their life insurance from German insurance companies. These companies will then find themselves making more payments for premature deaths relative to their competitors. To cover the increased costs, they will have to raise premiums, making themselves uncompetitive.

In an attempt to mitigate this problem, the law specifies that anyone taking out an insurance policy valued at more than 300,000 euro may be required to disclose the results of prior genetic tests.

But if people lie about whether they have previously been tested, that provision will be moot.

As genetic testing becomes increasingly able to predict not only health, but also some cognitive and personality traits, the prohibition on employer testing may also put German employers at a disadvantage in the international marketplace. They will invest resources in training employees whom their competitors will exclude from the initial pool of recruits.

This may be a humane thing to do, for it gives every individual a chance, irrespective of the genetic odds against their paying their way for the company.

In the long term, if we are serious about prohibiting such tests, we need an international agreement — on both insurance and employment — to ensure a level playing field for all countries. That will not be easy to achieve in a globally competitive economy in which some nations have demonstrably less respect for individual human rights than others.

The German law’s most controversial feature is a prohibition on prenatal genetic testing for diseases that will manifest themselves only in adulthood. Consider, for example, a woman who knows that her partner has the gene for Huntington’s disease. Any child of his has a 50 percent chance of inheriting the condition. If the child does inherit it, he or she will, at around 40, begin to suffer uncontrollable movements, personality changes, and a slow deterioration of cognitive capacities. People with Huntington’s disease usually die about 15 years after the onset of the symptoms. There is no cure.

No parents could want this future for their children. Prenatal testing of fetuses (or of in vitro embryos before transfer to the uterus) is now well established throughout the developed world. If the test is positive, the pregnancy can be terminated, or, in the case of pre-implantation diagnosis, the embryo will be discarded.

The new German law makes such tests a crime. The same is true of tests for the genes that strongly predispose women to breast cancer. As genetics advances, more such late-onset conditions will become detectable prenatally.

What could be the thinking behind such a law? One might take the view that 40 years of life before the onset of Huntington’s disease or breast cancer is better than no life at all. But if we take that into account, should we not also take into consideration the life of the child who the parents would have had, if they had been able to use prenatal diagnosis and be sure of having a child who does not carry the gene for the disease? Surely that child has better life prospects.

When we have a choice between lives with such different prospects — and can make the choice before the embryo or fetus has any awareness at all — shouldn’t we be able to choose the child with the better prospects?

It is not surprising that questions about genetic tests should receive special attention in Germany, given the national imperative of avoiding any repetition of the crimes of the Nazi era. But, in their laudable desire to distance themselves as much as possible from those atrocities, Germany’s legislators have enacted a law that makes it a crime to use modern science to avoid undoubted human tragedies. That is an absurd outcome. The pendulum has swung too far.